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Synovial spindle cell sarcoma, left lung. Anyone else have this?
Sarcoma | Last Active: Aug 10 7:25pm | Replies (17)Comment receiving replies
I was diagnosed with Kaposi’s sarcoma in a very small breast tumor during a routine mammogram. 6 weeks and many many tests later, no Dr can find out why I have this. Very, very rare in women. Don’t fit any part of profile. from Herpes 8 virus. No HIV ever or any other related viruses. I am a 78 year old woman who is fit and reasonably good health for my age. I will be having partial mastectomy in July but still waiting on results of other biopsies which so fare have been negative. My drs and hospital are partners with Mayo and they confirmed biopsy and pathology. Because it so frequently recurs in other soft tissues, would love to hear from anyone who has or had a nontraditional Kaposi sarcoma and treatment received. Jrs
Replies to "I was diagnosed with Kaposi’s sarcoma in a very small breast tumor during a routine mammogram...."
Thanks Colleen for connecting me. @jrs2024--this must certainly have come as a shock. I have a NET in the breast, so can't speak specifically to your situation. But with a very rare cancer I can just check in and send you my best. I found the uncertainty to be difficult--and still do. That is, no real studies or protocols. I'm glad your hospital is partnered with Mayo (as was my oncologist). Do you have any idea if you will have additional treatment?
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@jrs2024, I'm sure you and your team were surprised to find out the the breast tumor turned out to be Kaposi's sarcoma and not typical breast cancer. I can understand why your doctor's confirmed the pathology with Mayo Clinic. Thank goodness that they are being so thorough so that you get the most effective treatment for your version of Kaposi.
I'm connecting you with @cc44 who is a sarcoma survivor and a peer support person as well as @mir123, who had a neuroendocrine tumor of the breast. While they don't have the exact same diagnosis, they both understand the challenges of having a rare cancer. And in the case of @mir123, a rare cancer that appeared in the breast.
@jrs2024, while your cancer is not breast cancer, you may also wish to follow some of the discussions in the Breast Cancer support group as you prepare for your mastectomy. Do you plan to get reconstruction? Do you have questions about the surgery and recovery?